After years of asking, he changes his mind….

Posted by TakingItAStepAtATime

So….. it is almost October and October means Halloween, If you have not been here long, you may not understand just how much Halloween means to us here in the Taking it a Step at a Time house. Never fear…..you will soon learn.

DC has chosen his costumes (yes, plural – he has one for every party because, just one would be very boring) and I have to say that I was a little disappointed by his choices this season – but…… this is not about me. It is, but we will pretend that it is not….

October is also the time for Halloween reruns from the previous year, so to kick the month off, here is the first Halloween themed post from last year….

“Jim Dear?” – Not this year….

So Halloween is upon us. It is already September and we are a little bit behind schedule this year. We usually have our costumes chosen and purchased in August. We did pick out our “official” Halloween night costumes way back in April or May so we are not 100% behind, but we are still behind. There are plenty of parties to attend for which DC must have different costumes (gotta love this boy!).

Okay maybe we like Halloween just a little teeny tiny bit -but we’re not obsessed or anything….

Last week we discussed what party costumes he wanted to wear this ‘Holiday’ season. This is always a little bit of a challenge. At times the costumes that DC requests are just people that he likes who happen to be wearing regular everyday clothing, or it is an obscure character that nobody knows but him (he might get that from me). Most of the time there is no such costume available so my mission is to come up with something or make up something that at least in his mind, makes the point.

The one costume that continues to make the list from the time DC was very young is “Jim Dear” from Lady and the Tramp.

(sigh….) A man in a suit…..

Not my idea of a Halloween costume, but – this is not about me….

……not ALL about be, anyway.

But, this year I was prepared.

Last October we attended a fundraiser/gala with Tony Orlando. The gala had a 1940’s theme. It was not a costume party, it was a theme, but in keeping with DC’s love of costumes, I bought him a 40’s style hat to wear with his suit. There was also the added incentive to get him excited about going to the event of calling the hat and suit a costume. While I was shopping for said hat, I came across a derby style hat that closely resembles the hat that “Jim Dear” wears. I purchased that to save for this year.

While looking for items to make a “Timekeeper – Spy Kids – All The Time in the World” (yes, we must use the proper and entire title) costume last year I came across a tremendous amount of steampunk costumes. I discovered them too late for last years’ costumes (they had already been chosen and we can’t mess around with the costume line-up) but I knew that they would be a great option for this year.

2015 would finally be the year of “Jim Dear”.

I had everything ready when we sat down to choose his costumes. I had a choice of two suits up on the screen, I had a few options for “Lady” stuffed animals for him to carry. I even found a “Tramp”…. and I had the hat. I was excited because I knew that he would be so excited when he saw that one of his costumes would be “Jim Dear”. I saved the surprise costume for last.

He chose a Disney Character – surprise! He also chose a character from a television show – whoo hoo! – a current television show – bigger whoo hoo! When we had only one more to pick, I started to wonder why he hadn’t yet brought up “Jim Dear”. I thought he may have been so overwhelmed by looking at all of the other costumes that it had just slipped his mind, so I opened up the windows that I had saved, expecting him to be over the moon….

He said “No! No, Jim Dear!”

What ?!?

“No, Jim Dear!”

I asked him again just to be sure he was not confused, I showed him the hat that I already bought. I showed him the photos of the suits and stuffed animals – “NO! Jim Dear!”

sigh…….

Anyone in need of a black derby hat complete with decorative feather?

– in great condition – never been worn….

Star Trek Missions NY (and a little bit Reading Rainbow)

Posted by TakingItAStepAtATime

In honor of Star Trek (The Original Series) 50th anniversary I present Our Trip to Star Trek Missions New York….

I just happened to actually read my email one day in mid-August and I saw the announcement for Star Trek Mission NY on Labor Day weekend. I bought the tickets almost immediately. I have been a fan of Star Trek from the time the very first episode aired back in 1966 – <sarcasm font> I was just an infant, not even born, yet really <end sarcasm font>, so needless to say, I was excited.

The first obstacle for DC would be going to New York City (his favorite place) without visiting “DC’s New York City”; meaning the big Barnes and Noble, the Disney Store, the Eloise Store in the Plaza, Hershey Store, Hard Rock Café and ‘Citral’ Park (Central Park). I began explaining this to him weeks beforehand. We also promised him that we would go back another day very soon to spend the day doing his favorite things. As much as he seems to understand when I am prepping him for something, I never really know if he does until I get his reaction when it happens. I have to say that I did expect some kind of reaction to not going out into the city when we arrived, but the promise of going back another day seemed to be good enough. – Progress!

DC knows Star Trek TOS because he has me for a mother, of course. One of his first “signs” before he could speak was the “Live Long and Prosper” sign. Of course he did not know it meant LLAP, it was just his sign for Star Trek in general.

I have seen all of the incarnations of Star Trek over the years with the exception of Enterprise so I knew most of the guests that would be in attendance. DC? Not so much. We have been watching the original series on Netflix in the mornings before work and about a month ago we began alternating between that and Deep Space 9, so I was hopeful he would recognize a few others.

We got there not very long after the doors opened and I was amazed that it was not very crowded at all. I don’t know if it was because it was the very first one, the holiday weekend or if this was just the crowd they were expecting; in any case it worked out perfectly for us.

The first thing DC came upon was a Tribble and he had to have it. When he found that it made “Tribble” noises, he had to have it even more.

He got it……..

His normal “Arrival Anxiety” did not rear it’s head as it usually does when we first arrive anywhere. I was a bit surprised but relieved. We walked the show floor and came upon an Enterprise set where one could sit in the Captain’s chair. It was a long line, but he was all for it.

There was also a man off to the side of the set who looked so much like “Scotty” that I had to do a double take. It unnerved me for a second.

(While in line we were told that there is a replica of the Enterprise in Ticonderoga, NY so hmmmm…. I smell a road trip in the near future.)

By the time we finished taking photos of “Captain DC”, the autograph sessions were starting. DC recognizes Robert

Picardo from the Baltimore Con a few years ago so we headed there first.

For some reason, this is where his anxiety set in. The line was short, very short and as I said the hall was not crowded at all but this was where it hit. He started flapping angrily and making a horrendous noise. He used to make a clucking noise but it has evolved into something unrecognizable lately. In-between the flapping and the extremely loud noises he would stop only to say he was sorry and then start again. I could see that the woman in front of us getting a little bit nervous, but I just kept telling him to do what he had to do to calm down and as long as there was no one around for him to hit with his flapping arms, it was okay. She seemed to relax, I suppose because she saw I wasn’t treating it as a big deal. He did finally relax too. To keep him relaxed, I joked that he should not do that when he got to the table because he would scare Robert Picardo. He laughed. Still trying to keep his mind off of his anxiety, I asked him who we were going to look for next.

“Reading Rainbow. I have to find him. I will find him somewhere.”

The anticipation of meeting “Reading Rainbow Man” (DC-speak) took his mind off of whatever was making him anxious and he was back to his perfectly happy self when he got to the front of the line. He got Robert Picardo’s autograph and we set out on our hunt for Reading Rainbow Man.

We found “Reading Rainbow Man” (LeVar Burton to the rest of you) rather quickly. In true DC – delayed reaction and pronoun reversing fashion, the very first thing he said to him was “You scared me!”. LeVar, not knowing what was going on said “How did I scare you?”

“Noises”

I then had to explain that in the previous line I told him if he made that much noise he would scare people. LeVar understood and told him that no, DC had not frightened him. He asked “How are you?”

DC: “Twenty-Five”

Me: He asked how are you, not how old are you.

DC: “Great!”

The conversation continued pretty much like that, with me jumping in to translate when necessary.

DC had been looking so forward to meeting him and was so very excited when he did that I was kicking myself for not thinking about saving this meeting until later. I was worried that after meeting LeVar he would not be interested in staying any longer, but he surprised me once again and wanted to move on to the next meeting.

We got to see and meet quite a few people…….

The only Original Series cast member there that day was Walter Koenig. William Shatner was scheduled to appear on Sunday. DC met him at NY Comic-Con a few years earlier so we weren’t disappointed that we would be missing him this time. Of course, if he happened to have been there we surely would have been in his line too.

There were a good number of TNG cast there as well. We did not get to see all of them, but we saw Levar and Gates McFadden.

I asked him who he wanted to see next. He looked around toward the Deep Space 9 section and answered “Jake”. I was a little bit impressed with that since he has only been watching for a few weeks and I was not sure how much he was actually paying attention. Of course by the time we got to the front he did not ‘renember’ his name but that was all just a matter of him not understanding the question or that the question was not asked in a way he understood. He will typically give a lot of random answers until he is asked properly – unfortunately one never knows what “properly asking” might be on any given day. There are times when he can answer a question correctly the very first time the question is asked and other days, the question has to be asked in many different ways.

He saw Quark over in the next line. Quark, not in costume is only the principal from Buffy to DC. His line was a little bit longer than the others so we skipped over to Nana Visitor. DC was his charming self but when she told him her name he really got excited. He was clutching his chest and squealing with the biggest smile on his face. I was not expecting that reaction.

I don’t know about any of you, but most of the time when I take DC to a play, event or something of the sort, I spend more time watching him get excited than I do watching the play or show or whatever is going on. Then I get teary-eyed. That is just what happened here. He just was so thrilled to be talking to her and she was just so cheerful and upbeat with him that I not only got teary-eyed, but I thought I was going to burst out into an all out ugly face cry right there. It was tough trying to keep my composure. When we finished and headed back over to where Doug was holding up the pole he thought something had happened as it was pretty apparent that I was trying to contain myself. When I tried to explain it to him I got all choked up again. Sometimes I just fall apart when I see him so happy – I know, I know, get a grip, woman….

We walked around a little bit more waiting for the rest of our photo-ops when we came upon an attendee all dressed up in a long flowing gown. DC could hardly control himself. She was talking to people and not paying attention while DC was yelling “Excuse me! Excuse me!”. I had to keep telling him not to touch her dress but he wanted her attention so he tapped her on the shoulder before I could stop him. When she turned around the first thing he said was “Sorry to touch”. She smiled and told him it was all right and he said “Dress Beautiful” (and another squeal). That was all he needed to do; get her attention to tell her that her dress was beautiful. She thanked him and we were off to look at everything else there was to see.

It is a given that he will always find somewhere to buy a book………

He got to see his beloved Nana again at his DS9 cast photo-op (and Buffy’s ‘teacher’ who we never made it back to in the autograph lines). I think she may just have earned herself a place on DC’s favorite women list alongside of Felicia Day and Amy Adams.

What a perfect day! Everything went exactly as planned. The whole event was very well organized and of course it helped that it was not very crowded.

We all had a great time!

Well……

Except for this guy….

Except for this guy Grease photo

Except for this guy Shore Leave Photo

In case anyone might be wondering; the Reading Rainbow theme remains trapped in my head, still.

And, Oh – there were M&M’s

aaaaaaannnnnnnnd

On Your Marks, Get Set and Take a Bow

Posted by TakingItAStepAtATime

DC has participated in a variety of Special Olympics programs over the years, but never did I ever imagine he would like running. Yes, I was shocked too. We just gave it a try one year because he was tired of golf (10 years) and volleyball (4 years) because he, not really understanding the games, never advanced past the “skills” levels and that just gets boring. He swam for a good 10 years as well, but the program died off and went away. Skiing, you ask? One year and a half until I thought I’d have a heart attack and pulled him out.

“Done of Skiing” – DC-speak

Running was just something we were going to try. Because DC would rather stay home than do just about anything I always make him at least finish the season just to be sure he really doesn’t like something as opposed to him just not wanting to go out. With a few exceptions, most of the time he ends up enjoying what ever activity I have made him stick out to the end. But running? I never thought it would last. I was so wrong – he’s been running for a good six (or more) years now.

The Labor Day 5K is an event he does every year with the exception of 2015 when his seizures were brand new and me, being me was still too panicked to let him run a race. This 5k is not a Special Olympics event, it is a regular 5K attended by thousands of people as are most of the races his team participates in. The individual team members can pick and choose which races they would like to participate in. This is the race DC almost always runs.

DC is not the fastest runner but certainly far from the slowest. When he puts his mind to it he can run pretty fast, but he doesn’t really understand the competition of it all and really, that is fine with me. As at most races, there are tables set up along the route where people pass the runners water. The runners drink the water while running, but not DC. He stops and leisurely drinks his cup of water and then walks around looking for a garbage can. There are hundreds of cups on the ground because that is what you do when running a race, it is expected. Not DC! He knows that we do not throw garbage on the ground and being that there are no gray areas in DC’s mind, he is just not going to do that. Well, this year he did stop and take his time but he did throw his cup on the ground the first time Doug told him to. There was a gray area and he got past it – Progress.

There are plenty of spectators along the route cheering the runners on. DC upon hearing applause from a large group of spectators and DC being DC, stopped running, took a bow, waved and yelled “Thank-you everyone!” then continued on to the finish line…

Having to get up at 5:30 am on a holiday, I went on a hunt for coffee as soon as the race started because….coffee. I stood in the Dunkin Donuts line for quite some time. I did not realize how long until I got a text from Doug right when I finally made it to the counter telling me that they were in the home stretch. I got my coffee and headed to the finish line, but I was too late to see him come in.

He did announce “I did it!” when he saw me and also informed me that he won. I wonder if anyone told the race officials because they have him at 2426th out of 2658 runners? We’ll have to see about that.

Sub-minimum; another view

Posted by TakingItAStepAtATime

I just received a letter from the agency that DC “works” for. To paraphrase; there are new federal rules that will impose limits on people earning less than minimum wage. The clients that are already earning sub-minimum can continue to do so, but they will be required to receive “career counseling” annually. Basically, they will no longer be able to accept new clients at sub-minimum.

I know that there is cheering and celebration going on after reading the paragraph above but I ask that you take a minute to read another side to this issue, because there are two sides to this. If your child is not an adult and out of school, the reality of the “other side” for many may not be something you might be thinking about right now.

I agree that EVERYONE is entitled to be paid minimum wage, EVERYONE! The reality is that some of our children will never be able to work at Walmart, Target or hold a “regular” job. Should they earn minimum wage if they do not hold a regular job? Absolutely! Do I think my child deserves minimum wage? Absolutely again, but unfortunately the funding is not there to support it.

When DC was young and in school, I had no idea how any of this worked. I did not understand agencies or Group Supported Employment at all. I would have had the same knee-jerk reaction to him working at subminimum wage. I would have envisioned sweat shops and whatever other horrors that you might be envisioning right now.

My son works for a non profit agency – Group Supported Employment. He works in their greenhouse which is open to the public. He has staff supporting him all day, everyday. He earns less than minimum wage.

DC is 25 and will never be able to work without support – a good amount of support. The agency that provides his work program is funded by the state. Funding is cut each and every year – each and every year. We can all scream and yell that these programs need more funding, but the reality is that funding for programs for the disabled is cut every year. If his agency is made to pay their clients minimum wage, they could only afford to keep 6 of the 12 clients working in the greenhouse. Where would that leave my son and others like him? He has the right to feel productive. He has the right to do something meaningful with his time every day. Where would that leave him? Sitting home all day or in a day program (like a day care)? He loves his job. He likes to go to work every day. Basically what this letter is saying is that they will no longer be able to accept ANY client at subminimum, which in reality means they will not be able to accept ANY new clients at all – at least in their work programs. So where will all of the students leaving the school system go if they are not able to work at a regular job out in the community?

I do believe that agencies holding a below minimum certificate should be monitored closely, but to do away with them blindly is doing a disservice to those that are not able to hold a regular job.

This agency also supports and trains clients who are capable of going out and working in Walmart, etc. Those clients, after they are trained DO make minimum wage or more because they are paid directly by the company that hires them – while still getting support when needed and at times, transportation through the agency.

If your child is lucky enough to be able to work without support out in the community, that is great! If not, I hope that in the future these agencies are able to receive the funding and support that they need, because all of our children deserve that. Until then, please do not take away their opportunity to have a job like everyone else and benefit from the interaction with the public, while still having the support of staff to help them throughout their day.

I am in no way advocating for anyone to make less than minimum wage, I am saying that right now, this is the reality for my child. He is working like everyone else. He is in a place with staff, he is safe and he is being looked after.

For those of you that may be envisioning the “sweat shop” scenario; the “clients” attend the program for 6 hours per day. They do as much work as they are capable of doing. They are not forced to work. They are not doing hard labor or strapped to a chair to meet a quota. They are learning, they are socializing they are out in the community and making contact with the public. They are surrounded by and supported by agency staff. These “businesses” are created for the soul purpose of providing “employment” for their clients. They are not booming businesses and most of them are not profitable. Even though they are open to the public, they are providing a service to our kids, more than to the public (I can only speak of the agencies in our area, but I imagine that it is about the same in most agencies).

While the states continue to cut the funding of programs for people with disabilities, the Federal government in turn expects these already struggling agencies to now pay minimum wage. They are required to maintain a certain level and staff to client ratio, but when the funding disappears, the level of staff still must me maintained.

Think for a minute about where you think your child will be after he/she finishes school. Will he/she be able to go out and get a job and work without support? If the answer is no, or maybe not, then think about just what they will be doing instead. Will they stay home all day? Enter a day program/daycare? What do you think they would want to be doing? Would they like to say they have a job like everyone else around them?

As much as DC lives in the present and “what comes next” is not what is in his head most of the time, he does know that Mom is an adult and has a job. He knows that Doug has a job. He knows his friends have jobs. He knows that most adults have jobs. He knows that he is an adult. He likes that he goes to work. He likes that he has a job. But, unfortunately the government would rather see a large portion of this population sitting around at home or attending day/recreation programs than do something that might make them feel productive…. to have a job like everyone else.

Special Delivery and throwing a wrench in the routine

Posted by TakingItAStepAtATime

One of DC’s IP (no “E”- he is out of school) goals is for his staff to work with him on being home alone for small amounts of time. Anyone that knows me, knows that I am not comfortable with this at all but as he moved through middle school and high school his dismissal time got earlier and earlier. As he got older there were less to almost no options for after school care. He is verbal but does not communicate well so hiring and trusting a stranger was not an option and I was running out of people I knew to hire. After his freshman year of high school when I lost my last babysitter to college, I knew I really had to teach him to get into the house by himself and safely. I had cut my hours as much as possible without losing my full time status, but still the race with the bus was tight and a nerve-racking experience. I knew he really should learn how to get in, lock the door and call me, just in case there was a time that I was delayed getting home.

I began working on this a very long time ago, long before it was an official goal. We practiced quite a long time and finally made it to the point where he was okay for a few minutes. It is actually odd that they added it to his IP as a goal just a few years ago as by that time he had already mastered it, but I suppose practicing with his staff could only enforce what he had already learned.

I started the process unintentionally when he was still in middle school. Everyday when we would arrive home from where ever we had been I would hand him the key and let him unlock the door. Never thinking that he would ever be in the house alone I just thought that he should learn to use a key in case he had a locker when he went to high school.

After losing that last baby-sitter in high school, I started by going step-by-step through the routine with him. Unlocking the door to get in, locking the door behind him, calling me, getting a snack and waiting for me to come home. There were pictures and reminder notes everywhere. We did this for months before he got to the point where he did everything without prompting. Doing everything on his own when I am there never means he can focus enough to do it on his own.

So let the testing begin…..

I am fortunate that DC had the same bus driver and bus aide all through his 4 years at the High School and throughout the 2 year College Transition program. I am also fortunate that they were absolutely wonderful women and went above and beyond for all of the kids they drove. I knew they would cooperate.

My car, when parked behind the house could be seen from the main road that the bus drove down before turning onto the extension road that leads to our street. You really have to be looking for it in order to see it and my hope was that DC did not even realize that it was visible from the main road and would not be looking for it. The drivers were instructed to let him get off the bus only if they saw that my car was in back. I hoped that DC would not know that I was home and hiding in the garage. I wanted to be sure he would follow all of the steps we had gone over 100 times before, when I wasn’t there. The first day, he came home “by himself”, I could hear him barreling through the house. I waited and waited for my phone call – nothing, but I could still hear him stomping all over the house as if it he was having a dance party. Finally I dialed the house phone. The phone ringing must have reminded DC that he hadn’t called me and instead of answering the phone, he picked it up and began dialing (while I was on the phone) and began reciting his script:

DC: Hi, Mom! I am home!

Me: DC, you were supposed to call me when you got home.

DC: Yes. I’m sorry Mother (pulling out the formalities and using “mother”)

Me: Did you lock the door?

DC: Yes.

Me: Okay, Go get your snack and I will be home in a few minutes.

DC: Okay, see you later.

I waited in the garage for a few minutes and then opened the garage door as if I was just arriving and then closed it again. I came up the stairs and DC was waiting at the cellar door.

I looked around and the front door was not only unlocked but wide open.

Closed the door – NO

Locked the door – NO

Called Mom – NO

Got a snack – Yes

I did sort of expect him to be a bit confused the first few times – it was new.

We went through the whole routine again and he completed every step without a problem. We went through it every single day for weeks and even though he could do everything while I was there, every day it was the same outcome when he thought he was alone. I knew that he knew what he was supposed to do, but I also knew he needed some incentive to focus on what he needed to do, so after weeks of hiding in the garage and DC forgetting to complete every single step (except for the snack, of course) – I finally had to pull out the big guns.

“DC, if you forget to call me when you get home and I find the door unlocked one more time, you will lose your movies and computer this weekend.” That did it. The next day, he did everything perfectly – everything!

Now, I would never threaten his movies or computer use over something that I knew he was not capable of doing. In this case he was following all of the steps without any prompting while I was there. He just could not get himself to focus when I was not there. Losing his weekend computer time was just the incentive that he needed.

The next test was to be sure that he would not open the door for anyone. After a few weeks of hiding in the garage, I decided it was time to ring the doorbell and …… he answered the door. Knowing that this was not something I could test again right away because he would know it was me; I had to pull out the big guns immediately and threaten his weekend movie/computer time again. I waited a few weeks before I tested the “Do not open the door” rule and when I rang the bell, I could hear DC yelling “Do not open the door” and he did not open the door.

A friend said “You are going to tell him that he is allowed to open the door for the police.”

Umm, no.

For DC there is only “You can open the door” or “you can’t open the door” – there is no in-between. Fortunately our police department has a program in place where families of special needs children and adults can register with the department. If a call should ever come in to the police department for any reason, our address is flagged and the officers responding can pull up pertinent information about DC; verbal but does not communicate well – may not answer questions correctly – may change his answer if asked the same question more than once – may become upset if asked the same question too many times – not aggressive but he may become agitated and so on. The information on file also states that he will not open the door.

My hiding in the garage went on for about a year until I was as comfortable as I could be with this. I spoke to the bus driver again and told her that it was okay to let him off the bus as long as they did not leave until he was in the house and had closed the door behind him. Most of the time I still made it home before him, so I would park down the street, far enough so he and the drivers could not see me, but close enough so I could see the house and the door – I wanted to be sure that they were not leaving until he was inside. Even though I was home before he was 99.9% of the time and was sitting down the street, just knowing he could do it took away a lot of the panic of racing the bus every day. The very few times that he did arrive before I did, I was on the phone with him the entire time. As an additional safeguard in case I was in an accident or something like that, I had an alarm clock set in the living room and if I was not home by the time it went off, he was to call Doug or my mother. In case something like that ever did happen and he was not focused enough to call Doug or my mother, I set it up with Doug that I would call him when I got home and if he did not hear from me by a certain time, he would come right to my house.

Not long after all of this training my DDS (Department of Developmental Services) caseworker was able to secure a grant for support services and staff, so I was able to go back to my regular working hours. As I said, hiring strangers was out of the question but fortunately I was able to hire two people from the school system. One knew DC very well from school and the other worked with and/or knew at least 4 people that I knew well. Even though he now had staff and they usually arrived earlier than DC did, they still had him go through the motions of unlocking and locking the door and calling me, so he did not forget everything he learned.

When we went from high school/transition program to a day/work program, we lost his beloved bus driver and aide and had to move on to a livery service (the first service was a disaster, to put it mildly, but the next service driver was wonderful and the private hire he has right now is working out just fine). These drivers were also not allowed to leave until he was in the house and the door was closed behind him.

Since he started having seizures last summer, I am no longer comfortable with him being alone even for a few minutes. As I said, one or the other of his staff arrives at my house every day a few minutes before he does. Both are coming from full time day jobs so there is not a lot of wiggle room time-wise, but on Monday, Tuesday, Wednesday and Friday their arrival time works out perfectly. On Thursday’s his transportation arrives earlier than the rest of the week because his friend *Salli is not in the car- sometimes as much as a half hour earlier. On Thursday’s I leave work early so I am home when he arrives.

On this particular Thursday, I was home. The door was open but I didn’t hear the car arrive so I was not right in front of the door (now, due to said seizures, the driver is required to stay until he gets inside and either sees me or his staff). I believe it was our old driver’s last day. I could hear DC making the noise he makes when something is not right or exactly as it should be. Hearing this noise I could picture exactly what he was doing; coming up the sidewalk, looking at the ground and walking his determined/aggravated walk.

DC, from my many years of trying to avoid turning everything into a routine, can be pretty flexible about some things. His “coming home and getting into the house” routine is not one of them.

Before I made it to the front door, DC came in. A split second after he came inside, the screen door opened again and a pair of hands put a package down right behind him on the floor inside the door. DC, clearly upset, would not turn around and totally ignored the person and the package but the noise he was making got louder, knowing someone was behind him. I went to the door and the mailman was just getting back in his truck and DC’s driver, seeing me, started to pull away.

We have lived in this house for about 18 years. Does the mailman see us enough to know that DC is autistic? Probably not. This poor man was probably two steps behind DC all the way up the sidewalk wondering why this guy was ignoring him, walking so quickly and not turning around and take the package (and making that noise). DC, on the other hand was just becoming more and more annoyed that some guy was following him and messing up his routine.

There are just some routines that are not to be altered in any way, shape or form and this routine is certainly one of them.

But really, the whole thing must have been pretty entertaining for his driver on her last day and any other neighbors that may have been outside at the time …

****************

(FYI, Seeing a set of just hands and a package coming through the door has scared the life out of me more than once)

(The photo? A re-enactment, of course – but exactly what it looked like)

Opinions, Opinions and More Opinions

Posted by TakingItAStepAtATime

As parents of autistic children, we as a community seem to receive a good amount of unsolicited and unwanted parenting advice and opinions from family, friends and even strangers. Why these people seem to be under the impression that this is appropriate behavior or conversation, I do not know. If someone should ask my opinion about their neurotypical child I may give them my opinion – I may not, (especially since I do not have a neurotypical child to base my opinion on) but either way, I will most certainly not tell them that they are “doing it all wrong” or give an opinion in front of their child. As a general rule, if not asked I will keep my mouth shut. I do not understand why it always seems to be open season on us, our parenting skills and our children….

Dear Everyone At The Table:

Let’s just get this all over with now so I don’t have to listen to it in increments throughout the evening, shall we?

1. “Can’t he do that himself?”

Yes, he is perfectly capable of getting up and getting his own food, but I am closer and offered to do it for him. What about this could possibly concern you?

2. “Does he use that much salt at home?”

No, as a matter of fact he doesn’t use ANY salt at home. (See post) – I do not even buy salt as I don’t use it either. He and I together probably consume less salt than any single average person would. Someone along the way must have shown him that salt is used for something other than fairy dust so he does feel the need to use it when we go out to eat.

3. “Does he eat that much at home?”

No he doesn’t. Not even close. He would if I let him, but I don’t. Yes, he gets a little bit carried away when we are out, but one of his favorite things in life is going out to eat so what would be the fun in it if he doesn’t get to have what he likes?

4. “You should make him order a salad with his meal. Does he eat any vegetables?”

He eats a good amount of vegetables, probably more than you do. In his mind, salad and vegetables are not “out to eat” foods. (See answer #3) I don’t believe that I will have to rush him to the hospital for not having vegetables at this one meal. He eats a good amount of fruit too, but I am sure you will now point out how much sugar there is in fruit so I guess I may as well be giving him candy.

5. “Does he exercise? He looks like he could use some exercise”

He walks and goes to the Y at least 3 to 4 times a week. Not to mention the jumping and dancing he does quite continuously when he is at home. He also runs cross country in the fall and takes Zumba every time the class is offered.

6. “He’s put on a lot of weight. You really need to watch what he eats.”

He is on seizure medication – this is one side effect of said medication. I watch what he eats every day (see answer #3).

He exercises daily (see answer #5)

So with all of that being said; Would it be possible to reserve this and any further conversation about his weight or eating habits for a time when he is, you know, not sitting right here. My preference would be at a time when I am not here either.

If you should have any other comments or unsolicited opinions on any subject regarding my child, please reserve them for that same time.

While I am not or have ever been in the habit of commenting on everyone at this table’s parenting skills, I do have a list in my head going way back over the years that I can access at a moments notice. I am not afraid to use it…

(It’s a pretty extensive list)

Best Regards,

Vickie

THE Ultimate Toothbrush….really!

Posted by TakingItAStepAtATime

DC always had a problem with brushing his teeth. Like most things hygiene-wise, if he can not see it, he does not understand it. If his hands are not dirty (dirt that he can actually see) then why should he have to wash his hands so often? Why take a shower, wash his face, brush his teeth? If he can’t see it, it does not exist. No amount of explanation on my part makes it any clearer to him. He does all of these “chores” because I tell him to and only because I tell him to. And because it is something that I am telling him to do he, not really understanding, will pretty much just go through the motions. Yes, he is sent back to do it again and yes, many times I have to stand there to be sure he is doing it correctly or just do it myself.

Brushing his teeth was always the hardest for him.

About a year ago, I was reading a post from Autism-Mom about dental hygiene (the post below is an updated version of the post I originally read). A portion of that post was devoted to a toothbrush specially designed for children on the spectrum. Just by looking at the photo, before even reading the particulars, it made perfect sense. I ordered some for DC and while I was at it I ordered some for myself, since I seem to spend my life in the dentist’s office. It couldn’t hurt, right?

I have to say that even when he just goes through the motions this toothbrush has improved his brushing enormously. I rarely have to send him back to brush again and I have not had to do it for him – not even once.

Here’s the kicker….

I had a dental appointment this morning (with the good dentist and the good hygienist at the good dental practice – not the periodontist ). I only just opened my mouth and she said “Oh My God! You have no stain! What have you been doing?”

I drink A LOT of coffee and staining, specifically behind my front teeth is always a big job – a power tool – worthy job. I told her that the only thing that was different was the new toothbrush. She immediately looked it up on Amazon, called another hygienist in to see it and decided she would buy a few. I told her that the last time I was at the periodontist – the last time I stayed for the appointment – that is, he had made the same observation. The lack of stain was what first impressed her, but once we got past that excitement, it seemed that everything had improved, even after missing a cleaning.

(I do normally have a cleaning every three months, alternating between the periodontist and my regular dentist but I missed my last appointment with her because it was scheduled on the Monday after my step-father’s wake and funeral weekend and it just slipped my mind.)

It always seems as if I am fighting a loosing battle with my teeth, which were perfect until I was pregnant with DC and my teeth seemed to go straight downhill. This was THE fastest and least painful cleaning I have ever had. For the never-ending amount of time that I usually spend in the dental chair, this was a fantastic thing!

DENTAL HEALTH – BRUSHING HIS GUMS – via: Autism-Mom (reprinted with permission)

As the Navigator gets closer to entering puberty and adolescence, I have been thinking about how to add an increasing number of personal hygiene tasks to his routines.

Especially since we are still struggling with basic tooth brushing.

The Navigator doesn’t like brushing his gums. We have tried traditional toothbrushes, followed up by rubbing his gums, but he was not remotely interested in doing that. It took too long as far as he was concerned.

He liked using an electric toothbrush with a spinning head, but that did not solve the issue of his uncleaned gums.

Please Visit Autism-Mom for the rest of the post…

http://autism-mom.com/dental-health-brushing-his-gums/

*****

I do not receive any compensation of any kind for writing about this product. I am writing about our experience only. It works well for us.

Favorite Camp Day – Silly Hats..

Posted by TakingItAStepAtATime

DC’s favorite day of camp, Hat Day. I tried to talk him into the chicken hat, but he wasn’t going with it. He chose the green hat. He chose this hat because it had the long strings that are like long hair to him. There is nothing he wants more than to have long hair, but unfortunately his hair grows out and not down. He wore the hat. He won an award. Above all else, the morning went so much easier than last year, when I was afraid his favorite day would be ruined. Much easier….

From 2015:

Hat Day

Today is DC’s first full day at camp. He has attended this camp since he was 5 years old. He loves it. Before he left the school system at age 21, he was able to attend 9 to 3 every day for 7 weeks each summer. Now that he has a “job”, he normally uses some of his allotted vacation time to attend for two weeks of the season. He does and has always been able to attend the twice weekly after camp program.

He attended when he was at the camp full-time and still attends now after work. Because we took an extra vacation this year, he was not able to take an extra two weeks off to attend camp as he usually does, so I opted for him to go one day a week on Friday in addition to the two “after camp” sessions that do not interfere with his work schedule or his time off. This works out well because I am off from work on Fridays for the summer and I don’t have to figure out and schedule how he will get there each day.

The camp has what they call “Special Days” (more about that in an upcoming ‘Everything is Related’ post) listed on the calendar. Because of DC’s schedule he has missed one of his favorites, Hat Day (or “silly hat day” as DC likes to call it) for the past 3 years. He still has every single construction paper award that he has ever won for his hats on Hat Day and he is very proud of them.

Today happened to be Hat Day. As soon as DC discovered that he would be at camp on Hat Day, it was all that I heard about. We went through his collection of silly hats and he chose the cheeseburger hat.

We arrived at camp and he got himself situated. Although the director and assistant director are aware of his seizure, I wanted to stress again the fact that I really believed it had to do with the heat and the all-around stress of the day we had that day. I also wanted to talk to his group leader personally.

We were a bit early so the staff was still in their morning meeting. DC decided that he had to use the restroom. He came right out and informed me that there was no toilet paper.

(for someone who was so uncomfortable writing a post about toilet paper that I had to use a code word – ‘paper towels’, I do get that it is odd that I am writing a post about it again)

I got him a big handful from the lady’s room and he went back in, no problem…. or so I thought. When he came out, he would not let go of the fact that there was not toilet paper in the men’s room, even though he didn’t need it any longer, it wasn’t there. I told him that I would let the director know as soon as they were finished with their meeting – but he would just not calm down about it.

When the meeting was over he came with me – still ranting – to talk to the director. First I explained to her that what was going on right then was because there is no toilet paper in the rest room. She immediately called to one of her staff to replenish the supply. This did not do a thing to calm him down. It was too late. This coupled with his normal ‘arrival anxiety’ was too much and even when I showed him the new rolls, it didn’t matter, he was too far into this now. It went on for a while.

When he finally did calm down about that, he moved right into his normal routine of obsessing about me.

“I’m sorry, calm down now. I’m sorry. Not ‘crappy’ anymore “- (DC – speak “crabby”).

As many times that I have told him over the years that he has nothing to be sorry about (and as many times as I told him this morning), this is what happens. If we are home together, this could and has gone on for hours. If I am dropping him off somewhere, I try to just get him calm enough so that I can leave, because if I am there he will continue to perseverate on me.

I was worried and having seizure flashbacks because it was hot and now he was upset, so I was afraid to leave when I normally would have. He finally did calm down to the point where I felt comfortable leaving – not to say I feel comfortable leaving him anywhere since the seizure, but as comfortable as I can be now-a-days.

As I was leaving he moved on to obsessing about whether I was going to come back and when I was going to pick him up. This is his regular obsession – I do not know why – I have never been so much as a minute late in picking him up anywhere, ever, but it has always been a thing with him.

Now that he had moved on to “Mom is coming back”, his regular routine, I was sure it was safe to leave.

I hope his anxiety this morning does not ruin “Hat Day” for him. Fingers crossed that he comes home with that construction paper award today, because that will most certainly fix everything.

***********************

and later ……

I tell ya it’s frightening… (Happy 4th)

Posted by TakingItAStepAtATime

A repeat from last year. DC’s opinion about thunder, lightening or fireworks has not changed in the slightest. It’s unfortunate that firework season falls right around the same time as thunder storm season. But once I convince him that it is not thunder I will be chasing him out the door and hopefully this year will remember not to put the pajamas on too early. Happy 4th!

Thunder and Lightning – Happy 4th!

I know that fireworks are at times a big issue for children and adults with autism. This time of year is difficult for DC. It is not only Thunder and Lightening Season, but as we know, the firecrackers seem to begin exploding around the middle of June in anticipation of the 4th. I generally spend these two or three weeks explaining to DC over and over again that the noise he is hearing is not a storm, it is just someone shooting off fireworks. He is okay with that. For a child (man) that just cannot stand a storm, he was always fine with fireworks. He actually really LOVES fireworks, he always has.

To look at him when the first few go off, one would think he is terrified. He nearly jumps out of his skin and covers his ears, even when he knows they’re coming, but then he laughs and after the first few the ear covering is ends and he is stimming away.

We are fortunate that we never really have to go anywhere to see a really great 4th of July fireworks display. Someone in town (and I still really haven’t determined who) puts on a really fabulous display every year. At one time there were two big displays, one earlier in the evening that we could see perfectly from the front of the house and the other larger display that we could see perfectly from the back of our house.

I never really know what night they will go off, until they start. Generally I forget all about them until they start. I guarantee you that whether it be tonight or tomorrow night, as soon as DC realizes that what he is hearing is not thunder we will be standing outside in our pajamas.

Maybe this year I will try to think ahead and remember not to get changed so early……

“Mom, do you love meeee?”

Posted by TakingItAStepAtATime

From the time that I was old enough to think about it, I always promised myself that if I were ever to have children that there would never be a second in their lives that they would not know that they are loved. This would never be something that they would have to wonder about – not for a single moment…

I think I have lived up to that promise to myself.

DC can and does tell me that he loves me many times a day – complete with and accompanied by the “I love you sign”. I know that he understands in his own way, what that means. This is not to say that I believe it is always all about me. Much of the time it is but there are times when he just needs to have something to say. It’s kind of a comfort thing for him. He says it over and over again when he is in an uncomfortable situation or a place that is new to him.

But, back to me….

I especially love it when he, at 25 reverts back to “I love you Mommy” instead of Mom, Mother or Vickie. He is probably one of the most lovable people around and I am willing to take complete credit for that.

Is it just learned behavior and not real emotion?

Is it comparable to the times that I have to make a rule because I know he does not understand something?

Is he just, in his mind, following another rule?

Is he just going through the motions because that is what he thinks he should be doing or how he should be acting?

I used to wonder about that when he was younger but now I am convinced that although I am sure that some of that lovability was originally something that he learned, it IS also very full of emotion.

All of the above does not mean that he does not hear his fair share of yelling because let’s face it, every behavior can not be blamed on his autism.

When these situations arise and he is “in trouble” and after I start finding his apology notes everywhere – we always sit down and have a talk.

“No matter how upset Mom might get when you do something you are not supposed to… I always love you. When you are in trouble, I always love you. You never ever have to worry about that.”

When he is “in trouble” and we have not had the talk in what he thinks is a timely manner, he will come to me and say “Always ‘loves’ you.” He knows it, but he needs to have the talk. It’s a ritual and it is comforting to him.

DC’s ongoing “I Love you” campaign has evolved recently. While all of the above still holds true, he has added, ” Mom, do you love me?” (in his high pitched squeaky voice with the emphasis on the “me”). I know he is not questioning the fact. I know he knows this and I know that he just wants to hear it again. I also know that this line must be something he picked up from a book or a movie because he is using the correct pronouns.

Just to change it up a bit, my response to this question is: “I love you madly”.

Just to change it up a bit more, I will ask: “DC, do you love me?”

His response is another in the long list of words/phrases that he uses that I know I should correct speech-wise, but I do not because I love the way he says them. I hope that this response never changes.

Mom, I love you ‘Magly’.

No corrections necessary……….